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Hayley and son Mark’s Story

Our son Mark has Cutaneous Mastocytosis. I guess he is pretty rare as only about one in 400,000 – 500,000 in the UK has this condition. Sounds quite cool but actually it kinda’ sucks as it took many months and wrong diagnoses to figure out why our son is so “spotty” and what caused his allergic reactions followed by bursting blisters, full body flare-ups, hives, “nappy explosions” and itchy skin… just to name a few. No need to mention the times I was “gently” reminded that a child with chicken pox, measles etc. should not be out in public as it is contagious. Well, it is NOT! In fact it’s quite the opposite. Mark is likely to become unwell in public spaces due to the amount of chemicals present just everywhere. Yep, you grumpy lady from Tesco, it’s not measles it’s probably your awful perfume and a litre of a hairspray you are covered in that is making his spots go all red and aggressive (sorry I could not help it, we get new “diagnoses” from her every time we go shopping!!!).

Many doctors were involved and Mark was needlessly “treated” with steroid creams, antibiotics, all sorts of lotions and so on. One regular visit to our dermatologist led to full-day hospital stay, blood tests, pictures taken of his whole body, referral for a skin biopsy, urine samples, weighing, measuring… a lot of stress for all three of us. On the day of our diagnoses we got two website printouts about Masto that included information ranging from possibility of mild allergies to anaphylaxis, chances of outgrowing the condition to possibilities of developing Systemic Mastocytosis that may in a worst-case scenario result in chronic leukaemia. Needless to say not exactly what you need to hear in connection to your 4 month old baby. After weeks of our own research into mastocytosis we were referred to a support group where we found out about The UK Mastocytosis Support Group.

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